Childhood Cancer Awareness

September is Childhood Cancer Awareness Month

I've never been a fan of "cancer awareness"... it's always annoyed me.  In the past I've associated "awareness" with breast cancer awareness, and it's generally pissed me off.  Yeah, we are aware.  Now find a cure.

But that was before.  Before my child was diagnosed with cancer.  Before I realized how unaware I was about childhood cancer.

Here are some facts:

• Every year an estimated 250,000 new cases of cancer affect children under the age of 20.  That's almost 700 new kids affected EVERY DAY.

• Childhood cancer is the leading cause of death by disease in children under the age of 19 in the U.S.

• Every day, approximately 250 kids worldwide DIE from cancer.  That's 91,250 kids, every year, who lose their life to cancer.

• Childhood cancer is not just one disease.  It is made up of 12 major types and over 100 subtypes.

• 1 in 285 children in the U.S. will be diagnosed with cancer by the time they are 20 years old. 

• Childhood cancer occurs regularly, randomly, and spares no ethnic group, socioeconomic class, or geographic region.  It does not pick and chose.  It does not discriminate.  In the U.S. the incidence of cancer among teens and young adults is increasing at a greater rate than any other age group, except those over 65.

Despite these facts, childhood cancer research is vastly and consistently underfunded.

Even more infuriating, childhood cancer research receives just 4% of the annual budget of the National Cancer Institute. 

Here's the takeaway: childhood cancer is not rare, there still is no cure, and children die every single day because of a disease they did nothing to get.  The causes of most childhood cancers are still unknown.  Unlike most adult cancers, there is no strong link to lifestyle or environment to childhood cancer.

These statistics don't even touch on long term health effects of survivors, financial effects on families, and the psychosocial effects that threaten every aspect of a family's life.

My heart aches not just for my daughter, my other kids, my ex-husband... our family... but for all the families I see in the hallway on our unit.  All the mothers I see microwaving a cup of Easy Mac with hope-filled eyes that this time her child will eat something.  All the dads I see with blood shot eyes and blank stares trying to remain stoic in the elevator.

According to these statistics, we are not alone. But we also are very isolated.  We feel invisible.  We don't know how to talk to other parents anymore.  Some of us have lost faith and some of us found it. Some of us planned a Make a Wish trip and some of us planned a funeral.

We would ALL rather be the ones lying in our kid's hospital bed having the poison drip into us.

I hope this touched someone.  If it did, help spread awareness because we can and should do better.


Sources:

http://www.cancer.org/research/cancerfactsstatistics/cancerfactsfigures2014/ https://www.hhs.gov/about/budget/budget-in-brief/nih/index.html
The Lancet Oncology. 2013; 14 (3): e95-e103. https://www.cancer.gov/types/childhood-cancers/child-adolescent-cancers-fact-sheet Journal of American Medical Association: 2013; 309 (22): 2371-2381 

Relapse Setbacks

(Disclaimer:  Over on the left of the page, below the really old picture of me, and above the blog archive tab, you'll see a link called "abbreviations".... you may find that useful going forward.)

Shortly after transferring to UI and meeting her new team, we found out she did indeed relapse in both CNS and BM; and that BMT was our best chance at fighting the cancer this time.

We've been so busy actually dealing with the relapse, I haven't had time to update.  I don't know where to begin.

Reinduction (Block 1) was nothing short of hellacious.  She was hospitalized several times for nausea, dehydration, constipation, fever, infections, severe pain control.  However, at the end of Block 1 we found out that she was back into official remission.  Her CNS and BM were both cleared of the leukemia, thank God.

We are now on Block 2, day 13/22.  On Day 8 she was admitted for scheduled HD MTX that is a 36 hour infusion.  Day 10 she got more PEG.  We were all set to go home on Sunday Day 12, however there has been quite a setback.

First was the MRI findings of her knee.  She's had severe, ongoing pain that worsens after every steroid burst.  The MRI of her knee confirmed osteonecrosis, or avascular necrosis (AVN).  Finally, a source of the pain is identified which feels oddly comforting.  But this isn't what I wanted to hear.  She has to have more steroids (it's an integral part of her treatment), and the upcoming radiation therapy also can contribute to AVN.  The entire thing makes me very nervous.

Saturday night and early Sunday morning she developed Hand-Foot Skin Reaction (HFSR).  What this looks like is extremely red and swollen hands (it looks like she dipped her hands in boiling water), red and painful feet, and anywhere there was any rubbing, elastic, or adhesive she has red and painful blistering.  Additionally she has developed pretty severe mucositis.  She can't use her hands to do anything, she is unable to walk due to the pain in her feet, and her mouth is so sore she is using wall suction to clear secretions.

After a very long morning, the resident arrived, stood over Abigail's bedside with her arms crossed, chewing her gum.  She says, "Well you look a little better."  She is obviously blind.  She looked in her mouth, "Doesn't look too bad."  I lost it.  I lost all of my marbles all over the floor, and by the time I was done explaining to the resident I was NOT okay with oral pain medications, and that I wanted to see her DOCTOR this morning, the resident almost tripped over my marbles.

Doctor M showed up, finally... I could have hugged him.

He said we are done.  Done with this.  She is having a toxic chemo reaction and he said "no more."  We will finish Block 2 which has 2 more weeks of chemo; she will stay inpatient.  We won't do Block 3.  Instead we will do a modified "maintenance" Block that will be oral chemo (less toxic) that she can do at home, and IV Vincristine at UI every 3 weeks.  She will do this until she can start BMT conditioning.

We met with BMT nurse today and learned about conditioning.  There is cranial and whole body radiation, immunosuppressive drugs, and chemo that she will have to go through to get ready.  None of her siblings were close enough matches.  But there are several unrelated donors that we are waiting to hear from to see if they will agree to donate and to see when they are available to start the harvesting.  

I'm overwhelmed.  That's all for now.

(P.S. The wave tradition at Kinnick Stadium is truly awesome.  There is even a bead for the Beads of Courage program now specific to the wave!)

Huge (but still kinda-sorta-tentative) Update

Abigail’s oncologist called me tonight at 10:15. They made more slides of the BM yesterday, and today she was able to see enough cells on one of the slides to confidently say there’s no relapse in her bone marrow!

She warned me, of course, that the final decision lies on her new oncologist’s determination... but she did overnight the slides to him. 

I feel like her doctor is too cautious, too type A, too much of a perfectionist to give us information she wasn’t completely confident with. 

This is huge news. A CNS relapse only is much more favorable than CNS plus bone marrow.  

More later. It’s time we get a decent night’s sleep. 

Update - ish

Yesterday she had her echo, another port/central line placed, another spinal tap with IT methotrexate (chemo put in her spinal fluid), and a bone marrow aspiration.  Had to stay over a little for more IV fluids and pain control.

Things we know:
- Her blast cells in the CNS (cancer cells in spinal fluid) did not respond to the methotrexate last week.
-She is neutropenic, her white count is low, ANC is 50.
-She is sore, tired, hurts everywhere.
-We are transferring from Lurie's to University of Iowa Children's.  We have an appointment this coming Tuesday 7/24/18.  UI is an excellent place to be for BMT.

 Things we don't know:
-The bone marrow sample was unsatisfactory in her oncologist's opinion.  It was found to be hypocellular.  This could be due to a whole variety of reasons.  But since we are transferring to UI, she has consulted and is collaborating with the onc team there. We are anticipating a repeat bone marrow aspiration AND an additional biopsy.
-The bone marrow sample has been sent to John Hopkin's as well.
-We still don't know if she's had a BM relapse.

So much is uncertain.  I'm constantly checking my email, checking my phone.
I'm sorry I don't have more to update.
Just keep us in your prayers, thoughts, wishes, spells, chants, trances, meditations.... you know cover all bases.

Relapse

On Wednesday July 11, 2018 Abigail had her routine, monthly maintenance chemo with a spinal tap.  We were all excited and in kind of a celebratory mood because we were getting near the end of maintenance.  She and her team decided to remove her port.  We had a very long, but very good day at the hospital.  We got our pictures taken professionally by Flashes of Hope.  We laughed a lot.  Her nurse Lana asked if she was going to ring the bell.  But alas, "No," she said.  "It's not time yet," she said.  And she was right, there were still 5 more Maintenance treatments left before she could ring the bell officially.

It's not time yet.

On Thursday morning, July 12, I looked at my phone and saw a missed call from the hospital.  I was busy seeing patients in my office, very busy because I was the only provider that day in the clinic.  By the time I was able to look at my phone again, 1130 AM, I had more missed calls, a voice mail, and an email where the oncology NP gave me her cell number to call.

I went to my office and shut the door.  You just know.  I knew.  I knew what Maureen was going to tell me.  "The tap results came back.  There's blast cells.  I'm so sorry."

I don't remember much.  I must have made some loud noise, or my sobbing was loud because I remember my medical assistant rubbing my back and handing me tissue.  She must have heard and entered my office.  I started writing down everything Maureen was saying, and when I look at that paper now, I can't make out anything.  I understand 'out of body' experiences now on a much different level.

I went home.  I went to my apartment.  Empty.  Quiet.  Alone.  It was 12 noon.  I sat at my kitchen table.  I called my friend who unfortunately knows what this feels like.  My "Surrogate-Mom-Friend."  I couldn't call anyone else, certainly not my family.  I needed to be supported.  Not supporting.  At the time of this writing, the only people who know are myself, Abigail, Abigail's father, and 2 extremely close friends who I am deeply connected to.  I won't publish this post until Abigail says she is ready for me to.  

Surrogate-Mom-Friend told me: she knows I'm going to go to my dark place.  And it's okay to hang out there for a little bit, maybe the rest of the day, but then I have to get my shit together.  I spent the rest of the afternoon emailing Abigail's oncology NP, researching her cancer relapse and prognosis, and figuring out how to tell her.  I had a glass of bourbon.  I took a shower.  And I got my shit together.  I cried myself to sleep.  I woke up in the middle of the night and cried some more.  At 5 AM I got out of bed and cried in the shower.  At 9 AM I took another shower and cried a little more.  

The shower crying has rapidly returned.

Friday July 13, Abigail and I went to lunch and shopped at a local boutique store.  We bought each other bracelets, I bought a new planner -  because you know, when I'm stressed I like to organize, make spreadsheets, check things off of lists.  Went back to my apartment and had some well needed alone time.  I had to tell her she relapsed.  It's not fair.  If I were a "regular mom," would I have to tell her?  Can't the doctors tell her?  It didn't matter.  I had to do it, and I did it.  

I gave her the smallest amount of information, let it sink in, waited for her to ask a question, or have a response.  Then gave more information.  Lather.  Rinse.  Repeat.  She's still processing.  

There have been many many changes since her diagnosis 2 years ago.  Big changes.  Changes to our family, my job, where we live.  I believe the changes to be positive ones.  Growth.  I reminded her how strong she is, how much she has already gone through, and how those experiences have made her even stronger and able to fight even harder.  

It's true.  She's the strongest person I know.

So here we go again.

************************************

I don't know the specific treatment plan yet for her relapse, because we don't know the type/site of relapse yet.  At this time it is certainly extramedullary but we won't know if it is combined in marrow.  If she has combined extramedullary/marrow relapse, that treatment will look different.  Next week she will have another spinal tap with IT chemo (using 3 different agents), a bone marrow biopsy, her port put back in (FUCK, that was a blow to her), and she will have more labs and an echocardiogram.  

Then we will know how to proceed.  

Another Day 1.  Another fucking Day 1.  We had gotten to the point in treatment where we no longer were counting days, but rather how many weeks between treatment.  Her dad and I were rotating her monthly treatments.  Everything was working like a well-oiled machine.  All the moving parts were coordinated.  

**********************************

How Abigail is doing:

At least she is strong, healthy, and feeling well as we enter reinduction.  The first induction phase was especially hard on her because she was so so so sick at time of diagnosis.  I reminded her of this and I think it helped her regain perspective.  I told her she can go to her dark place for a little while, but then she has to get her shit together and fucking fight even harder than ever.  

Then she said, "I guess I can cancel that hair appointment I made."  Then we both laughed and cried at the very sick sense of humor we share.

How Dad is doing:

I told him tonight before bed and I struggled to support him.  [If you're reading this, I'm sorry.  My reserves were low.]  He sobbed.  I told him he can go to his dark place for a little while, just for tonight, but then he has to get his shit together and be strong for our daughter so she can fight harder than ever.  

***********************************

So that's where we are at the moment.  Without having more information about her type of relapse, I don't have anything more that would be constructive to share right now.  There's so many variables.

We are getting our shit together, and I'm not letting anyone stay in their dark place very long.  

If you have any questions, please ask them here, or post it on FB.  I bet someone else might have the same question, and it will help me from having to answer a million separate messages.  That sounds so very teacher-ish of me, but I'm trying to be assertive, realistic, and prioritize the critical stuff from the important stuff.

Homecoming

Today is Abigail's homecoming dance.  It's a bittersweet day for me.  A mix of fear and pride.

I am proud of how brave she is.  She has a homecoming dress, a date, and a great bunch of friends.  We've spent the past week trying to figure out what she will do for a head covering.  She has a really HOTT wig, but the problem is that it is also hot in a literal sense.  She is still not comfortable going with nothing (but I have noticed she is doing this more around the house).  We went to Ulta yesterday and I probably overspent there (sorry Susie), but she did get some money from Gramma Roo (thank you so much).  She got a little makeover, it was the sweetest thing ever.  The woman helping us was the most kind and caring person.  You can tell when someone is genuine... that was her.  A genuine soul.

But I am afraid.

I'm afraid of her being sick there, getting too tired, getting an infection.  I'm afraid of things that I cannot even say out loud.  I'm afraid of things no parent should be afraid of.

**********

Today we are 3 weeks into Consolidation Part 1.  Day 20 to be exact.  Consolidation is two parts.  Part 1 is days 1-28, and Part 2 is days 29-57.  Abigail was randomized to the Experimental Arm of the study AALL1131.  To recap, she has VHR B-ALL (very high risk, b-cell, acute lymphoblastic leukemia).

I would like to report that things have returned to normal.

They have not.

We have found a new-normal.


**********

The boring part of the update: medical stuff.

The past 3 weeks have been a roller coaster for us.  Abigail had an acute psychotic episode for about a week.  I was very scared.  Her team has still not determined any metabolic or physiologic cause for this, but she has fully recovered and is back to herself.  She's had her PICC line removed and a port placed.  She has been trying to go to school, but most days is not well enough.  We have a new tutor.  That's right we are on our second, the first was not a good fit.

I've grown to feel a sense of attachment to her nurse practitioner, Maureen.  She calls weekly. I feel like she really cares.  Her doctor, Elaine, has earned 100% of my trust as well.  Here's why:

Abigail has had strange back and neck pain intermittently since diagnosis.  Accompanied by headaches and an almost inability to move.  We were told "it's muscular" and were treating accordingly with no relief.  At her appointment on Monday Elaine asked more questions and did an exam, which to my horror was positive for meningitis.  It was another day where I hated that I know what I know.

Elaine reassured me.  It's aseptic meningitis.  It's from her IT methotrexate and that day she made the decision to cancel her lumbar puncture and IT mtx.  Her platelets are only 45 so there was some conflict about whether or not it was appropriate to use NSAIDs for pain control.  They did give her a dose of Toradol in her IV, and it helped some.  However all week she's been struggling with pain.

Two weeks ago her hemoglobin was down to 6.3.  She had to get 3 units of PRBCs.  I think her counts are probably down very low again by how she looks today and how she feels (very dizzy and nauseated, fatigued, and pale).

In the last 3 weeks a summer cold has run through the house.  I was terrified Abigail would get sick.

And she did.

But, it was not the end of the world and she is actually almost fully recovered.

**********

I think that's what I'm learning.  That's been my lesson in life.  Both: finding a new normal and it's not the end of the world.  Some people have this inherent ability to see life through this lens.  I've had to learn it.  I am learning it.

Thank you for anyone who continues to read this rambling.

For my ex-husband's family: I deeply apologize for not updating sooner.  I realize you probably do not feel comfortable reaching out to me to ask about her.

"Believe in love's infinite journey, for it is your own, for you are love. Love is life"

--Rumi

Minimal Residual Disease (MRD)

On Monday Abigail had another lumbar puncture (LP) and bone marrow (BM) test.  The BM test is used at the end of induction to test for response to treatment. The scientists use a special test to look for the number of leukemic cells remaining in the bone marrow, which is called the minimal residual disease (MRD).  This test is 1000 times more sensitive than looking at the bone marrow under a microscope (that was the 'old way').   In order to be considered MRD negative, the result has to be 0.01% or less (leukemic cells present).  We were told it would be about 3 days, maybe 4, to get the results.

The MRD is only one factor that may predict a child's prognosis.  The other factors feel like they are already stacked against us: age and her chromosome translocation.  I was so very hopeful on the MRD results.

Monday's CBC result was extremely promising; I teared up when I told Susie.

WBC: 1.59

Hgb: 10.1

Hct: 31.1

Platelets: 264

ANC: 1081 (Over 1,000 is considered normal, and as you may recall the ANC is what we use to judge how strong her immune system is.)

Her labs are normalizing, and as her doctor Elaine put it, "That's what happens when the kid goes into remission."  So we went home Monday night with a light heart full of optimism.  Also Abigail tolerated the LP and BM better than when she had those procedures at UW.  She had no spinal headache whatsoever.  I did have to be demanding (read: bitchy) about the pre-bolus.  And after I talked to the anesthesiologist and explained what happened before, he reassured me that he felt this would not happen again.

It's hard to trust.  Especially when you don't feel heard.

She was able to lie flat for a little over an hour post-procedure, she got some tylenol and a caffeine tablet.  Our plan was to go to the Ronald McDonald House Monday night, but she felt so well, we decided to just go home.

Yesterday we were told her MRD, unfortunately, was positive.  I had a small breakdown, fear crept in.  Abigail was sitting at the dining room table with her tutor doing college algebra lessons, and I was on the couch feeling myself fall into the dark hole.  I started hearing that voice -- you know the voice, the one that's always there being negative.  The voice you don't even realize you hear sometimes.  The voice you have to fight to be louder than.  "What is the point of anything."

After a pretty lengthy discussion with both Elaine and Maureen,  I felt this news was less dreadful than I initially did.  Her MRD result was 0.036%, which I'm told is still extremely low, but also definitely positive.  This means she is in a very high risk category for disease relapse.  Elaine told me at this point we should not be worried about Abigail beating this cancer, but about it coming back.  She reassured us we are already in the very high risk category because of her age and her genetic report, so our plan does not change.  We continue with consolidation (the next phase) which lasts about 2 months.  At the end of the consolidation phase we will re-test the BM and hope for a negative MRD at that time.

I tried not to ask, and I tried not to want to know.  But I asked anyway.

What if the MRD is positive again?

We will consider transplant.

But I'm perpetually working on living in the moment.  And in this moment Abigail is doing college algebra with her tutor.  She has minimal pain, good blood counts, acceptable energy level.  She is smiling and laughing.  She has friends who love her and she is planning on going to homecoming in a few weeks.

In this moment we needed to decide whether or not to stay on study or go off.  I wanted to go off study.   Elaine gave us her HOME NUMBER to call her last night if we had any questions about the study at all.  Who does that?  I'm extremely impressed with her.  We presented the options to Abigail, after explaining best we could what her MRD results meant.

We are staying on study.  Today or tomorrow we will know the results of the randomization and will know which arm she has chosen (which treatment plan).  The study for those readers who are so inclined to want to know such a detail is called AALL 1131.

Monday if her counts are still good, she will have her port placed, and we will start Day 1 of consolidation which consists of a very, very long chemo day.  (Here is a website that explains what a port is.  Right now she has a PICC line.)   Here we go, another beginning.  Another Day 1.

"Be brave my darling.

You have faced dark times before

and you're still here now."

C.T.L.